PA Specialist in the UK?

[Bellmore2089]

I'm an American who was diagnosed with PA two years ago. It's very difficult to find doctors in the US who treat PA seriously, or even know what it is. I will be in Liverpool and London starting next week, and I'm hoping I can meet with an experienced and knowledgeable PA practitioner while in the UK. Can anyone on this forum connect me with resources that will help me locate a PA specialist in England? Thank you!

[Sleepybunny]

Hi,

I hope you find someone, personally I'm not aware of any PA specialist in UK.

Maybe you could join and talk to PAS. They're based in Wales but have some overseas members. I don't know if they could recommend someone.

pernicious-anaemia-society....

If you're travelling in Europe, there's the B12 Institute in Netherlands but I don't know much about it.

b12-institute.nl/en/home-2/

[27Protons in reply to Sleepybunny]

If it still of help although it was probably 5 year ago at this point so it could have changed i think the PAS maybe are limited in what they can say as when I asked this question the advisor recommended asking on this forum.

[Hidden]

hi Bellmore2089,I’ve sent you a p.m as we are not allowed to name names here,best of luck.

[Lowblow in reply to Hidden]

Hi .. please could you pm me too if you can advice somebody good ?

[Hidden in reply to Lowblow]

pm sent

[qwertystar in reply to Hidden]

could you please pm me the details too?

[Hidden in reply to qwertystar]

pm sent best of luck

[Myoldcat in reply to Hidden]

Dear Hidden, I'm also searching for the same elusive specialist in the London area if you have a recommendation...? Many thanks x

[Hidden]

the doctor I found that helped me most tends to lead towards functional medicine.He’s a consultant endo,London based and he correctly diagnosed functional b12 deficiency after I had MMA test and then pointed me in the right direction to make me have further testing ,intrinsic factor which confirmed p.a.

I had to amicably part ways with him because I’d run out of funds,he’s very expensive, but my then gp did follow up on his recommendations and I made great progress thanks to him keeping the gp in the loop and having a gp at that time intelligent enough to listen to him.

I’ll always be grateful to him but he follows a very strict regime,keto expensive supplements etc

[Dilly_blue in reply to Hidden]

please could you send me the details too? Many thanks, D

[JadeRR in reply to Hidden]

please would you send me the details as well? Would be hugely grateful. Thanks very much

[27Protons in reply to Hidden]

sorry to be a pain, is it possible to pm me that doctor details too? In case he can help with intrinsic factor antibody negative pernicious anemia as you mentioned he understands functional b12 deficiency (I'm right in saying at bit of a simplification this is when you need to keep levels high to get b12 into cells?) Thanks

[Hidden in reply to 27Protons]

that’s correct,I have confirmed b12 functional deficiency by him and I have confirmed pernicious anemia by further testing which he had suggested.

Pm to follow x

[newlandvale in reply to Hidden]

Any chance you could pm me too, please. Also how do I find a pm? Will I receive an email notification as with other replies? Thank you in advance

[Hidden in reply to newlandvale]

pm sent

[newlandvale in reply to Hidden]

Thanks Happypensionerclub ... but where do I find it? Can anyone help me find a pm?

[newlandvale in reply to newlandvale]

found it! thanks very much for your help

[jade_s in reply to newlandvale]

Maybe you will find my PM too Sorry i should have let you know i sent one.

[Hidden in reply to newlandvale]

👍

[Hidden in reply to newlandvale]

top of this page click on chat

[27Protons in reply to Hidden]

Thanks and sorry for delay in getting back to you I know there would be someone on Harley Street - I didn't think about looking at an endocrinologist and suspect you have a GP like mine who sound like they will help if there is a consultant who agrees (unlike the 1s at my local hospital who can't even read the guidelines as inadequate as they are) and it doesn't help there is not a clear specialism pernicious anaemia comes under - you may be referred to haematology &/or neurology due to symptoms and if you have a slightly clued up GP that may ask question like what is causing this deficiency so we get  gastroenterology (which make sense as pernicious anaemia would be called Autoimmune Metaplastic Atrophic Gastritis (AMAG) if it was named today although you would think doctors would know what pernicious means in this context - deadly/fatal) -

I see why you had to amicably part ways with him at £500/hour - how long did you need to see him for to get started and did you then move on to a yearly catch up?

[Hidden in reply to 27Protons]

I only saw him once ,I had emailed a long list of symptoms to him along with my private MMA result and to give him credit he seemed to know immediately which areas needed further investigating ,I’d had a brain Injury in yet another of my bad falls and he wanted me to also be tested for pituatory damage amongst other things and the cash costs were scarily racking up so I was honest with him and said sorry I can’t afford you as obviously I can’t work and have no insurance so he sent a letter to gp asking him to to specific things on the nhs ,some he did some he didn’t,I then carried on having private testing and scans done as I learned more and that’s how I got where am today.

[27Protons in reply to Hidden]

yes of course why didn't I think of this before a consultant would normally look at cases that have being referred to them by GPs so would be used to being given case studies in this way, maybe seeing you once or twice (vs a private GP) and reporting back to a GP on what they should do.

Unfortunately due to the cost of living situation (I'm looking at near £2000 electricity bill if nothing done after April when it was less than 1/4 of that in 2021 - for context for people who don't live in the UK) and likelihood we will have a cold winter since the last few have being quite mild where I live in Southern England (no snow or below 0ºc daytime temperatures) I don't know what I can spend continuously yet so I'm going have to exhaust 1 other idea first - a referral to another hospital in England with a consultant who actually can at the very least read and tell my GP what the guideline are and to follow them as inadequate as they are in case it becomes difficult to obtain vitamin b12 from Germany (I really need to find another country as backup) and I can't get a private prescription in the UK.

Thanks for your help it giving me some ideas.

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I case it helps others it sounds like a private consultant maybe more useful and cost effective in the long term (I will try and report back in a new thread on this forum) if it gets you help or even acknowledgment (in case it becomes difficult to obtain vitamin b12 from abroad) on the NHS vs private GPs which I have used so far and I have being shown to self inject (so it still useful if you need help in this area and they can prescribe vitamin b12 although its cheaper to import it in bulk - maybe a mix could be useful) I have not being able to get to the cause on my vitamin b12 deficiency or formally acknowledged by the NHS as the intrinsic factor antibody test negative result can be wrong 50% of the time but a positive result is almost certainly accurate (what a wonderful test?) and apparently even Martyn Hooper had a few negative test before it was found.

[MoKayD]

Do PA specialists exist? It would be wonderful if they did. I think the best we can hope for is a GP who understands B12 deficiency.

[Hidden in reply to MoKayD]

I don’t believe they do but I do believe if a gp or a consultant, in whichever field of expertise, shows a willingness to help and understand our challenges with this then at the very least we should pass on our experiences with them,the op can then do some research and make their own choices.We have to keep that hope alive don’t we. Take care x

[SunnyWorld]

 would love to know 🤣